Tilly and her family have faced a steep learning curve as they’ve navigated the challenges of her diagnosis. In this piece, Tilly’s mum, Dee, shares their journey and reflects on how comprehensive wraparound care—like that provided through the Kentown model—could have made a difference.

Tilly is nine years old. She is angelic, cheeky and sassy. She is very sociable and funny and loves maths, reading and writing.

Tilly also has Rett Syndrome, a rare, life limiting neurological syndrome that means she has 24-hour care needs.

Tilly is intellectually aware and smart. However, she needs support with all her needs. She is in a wheelchair, can’t use her hands, has a feeding tube, is non-verbal, has a significantly curved spine, weak bones, and can’t hold herself upright without help.

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It has been a very interesting journey since her diagnosis in 2018. I thought we would receive lots of wraparound care for Tilly because of her complexities.

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But the strain on services in social care and NHS are all too apparent. 

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Tilly had a school nurse, and now has one based at a nearby specialist school, but during evenings and weekends I’m not sure who I am supposed to call, so I go direct to my GP or to A&E. We now have access to community nursing but for a time it was just the GP and school nurses.

This situation scares me because it is a lot of responsibility for me to escalate all because I don’t have a nursing team I can call on out of hours.

When Tilly was first diagnosed a Clinical Psychologist was attached to her team and I had therapy every week for more than a year. That helped me reconcile myself with Tilly’s diagnosis and was life changing in terms of having the tools to cope with the roller-coaster of developments, including home renovations, broken bones, and feeding tubes.

But I don’t think this is a given to receive therapy which is a crying shame because all newly diagnosed parents should be offered therapy at the start, and when triggers happen, such as the syndrome escalating, or new symptoms appearing. Or just be the need to call someone if you are feeling exhausted or overwhelmed, which can happen when you are caring for your child with significant medical needs.

As a parent you are expected to want to change the NG tube, through the nose, or advance and rotate the feeding button in the tummy, or use the nebuliser. I don’t think professionals always understand the emotional impact of having to carry out medical interventions with your child, something they do every day.

You don’t expect to become the medical support for your child - it's a huge responsibility. I think it is vital medical professionals understand that and mitigate it by offering support and the choice to parents as to whether they want to do it, and, if they need psychological support, to help them accept what they need to do medically for their child.

I asked for extra time in hospital to understand how to advance and rotate (turn) Tilly’s PEG feeding button in her tummy. It took me a long time to accept she would never taste food again and that I would have to get used to feeding her straight into her tummy.

I have stayed overnight to get trained on giving her a CiPap mask overnight to help with her breathing. These developments from a parental perspective can’t be overestimated. The impact on a parent and their child and siblings can be significant.

I have received lots of support in the form of mental health support and been given information on short breaks from Together for Short Lives who understand the impact on parents.  Niche support for parents with poorly children isn’t covered by generalised support. It has to be specialised because it is such an unusual high pressure situation. 

Tilly’s sister is 16 months older and has had to deal with a lot during Tilly’s lifetime.

They go to different schools, so people don’t see Tilly - she is probably an abstract concept. I must therefore ensure school is supporting her sister and helping her because she is exposed to big situations such as paramedics rushing her sister to hospital, seeing her wired up to machines in high dependency and me resuscitating her sister when she falls unconscious.

It is vital parents and siblings are given wraparound support, to ensure they are taking care of themselves and processing things as and when they happen. I am very conscious of advocating for Tilly and her sister to ensure they get what they need.

The Kentown model would have been a gamechanger for us, because everything Tilly currently gets means another job for me. If a model like Kentown meant specialist professionals coming to my home and lifting some of my many jobs, so I got time to myself, that would be incredible - knowing that qualified professionals, not scared of her complexities, could just step in and provide that support, emotionally and physically.

I think the Kentown model will really change things because it is taking pressure off families, seeing what they need and providing it in their home.

Not another trip to the hospital, or meeting with professionals. Just specialised supportive care for your child and the extended family. And not an extra job for parents already spinning 50 plates.

That is worth its weight in gold.